Thursday, February 16, 2012

Can It Be? Real Progress?

This past week has been a mixed bag.  We've had a head cold making the rounds until every single one of us has had it, and not much has gotten accomplished around here.

However, despite the case of the "Blahs", we have had some really wonderful things happening as well.  It started Sunday with the rental of our little rehab house!  We met our tenants that afternoon and got documents signed and handed over keys.  I can't tell you how gratifying it was for all of us to stand outside with the young wife and see the huge smile on her face as she said "This is the nicest place I will have ever lived in!  It's like getting a brand new house.  We feel so lucky."  We hope that all our hard work will benefit these folks as they make their home there and raise their young son.

Another positive thing that happened while I was in the middle of typing this is that Matthew completed his drill test for his 3rd rank advancement in Civil Air Patrol!  He had already passed the academic component, so now he has advanced 3 times since September.  In addition, he will now be training to be part of the honor guard.  What a gift this program has been for him!  He is very invested in it, is working hard, and is learning a lot about himself.  I wish we could find something for each of the kids that they were so interested in.  We are waiting to hear about a scholarship for him for the Air Force Academy camp this summer.  He has also earned money to contribute toward the cost of his camp and the travel involved, thanks to a few special people who have hired him to do a few odd jobs, and he is working this weekend for Dominick as well.

Better yet is that we may really be on to something for Kenny.  After giving up completely on the school district to be able to offer much help, and before trying more expensive routes, I called a retired special education consultant who a friend of ours recommended.  After a fairly long phone conversation and sending her every possible document I had regarding Kenny's history, she called me back and was excited about having the chance to help us "solve the puzzle".  She spoke quite reasonably about what might be realistic to expect in terms of remediation, and really understood that we are not looking for miracles, but for guidance in educating Kenny in the most effective ways and what coping strategies might be the most effective.

Miss Zoe came yesterday for the first day of an anticipated 4-5 more days of evaluation once per week.  After she was done for the morning, Kenny and I had a long conversation about how he felt it had gone and what were his initial impressions.  It was the first time I have seen him actually excited!  He told me he could see right away that the things she was having him do meant that she understood what he was struggling with.  He felt she was very honest when right away she said up front "Everyones brain works differently, and some brains don't work in the same way as everyone elses does.  We can't always fix what is wrong, but we can learn different ways of remembering things or working with the brains we have."  He said it made him feel better because she was straightforward about it, and treated him like he wanted to be treated.  She was respectful of the fact that he knew something was wrong, wasn't making promises, but held out hope for improvement.  He was quite angry when the special ed teacher with the district kept asking him to leave the room when he wanted to speak with me about Kenny.  He rightfully said "Mommy, it's MY brain and it's not like I am stupid and don't know something's wrong.  You never keep secrets from me and it's like he is treating me like a baby."  I explained that some parents don't want their kids to know certain information, but that we don't operate that way, and that might be unusual for folks from the school.

What I loved though was that Miss Zoe immediately saw what has perplexed us all along, that he is not the student he appears to be on paper, and she said flat out "Kenny is a really bright kid, that is easy to see, he just needs to learn differently." and guess what?  She already had taught him a trick to help him remember his phone number!  A day later, he repeated it this morning.  We'll see how long it lasts, but for him to remember my cell phone even 24 hours is a surprise!

Another big boost came from Miss Zoe telling me that we were already doing an awful lot right with Kenny, as she said he was explaining to her many of the ways we learn at home, he showed her the notebook from the house project, he told her that I have explained to him that we need to use both sides of his brain to help him learn things more easily and that he has to say it, discuss it, write it and draw it in many different subjects.  She told me that somehow I had already taken a lot of steps in the right direction just by watching him and trying to teach him in multiple ways.  While she said that, of course, she is not nearly done with testing, she could already tell me that all the way through his academic career he needed to learn things as hands on as possible, which is much harder the older a child gets so it will require some real brainstorming on my part, I guess.  We will never be able to fully rely on traditional textbooks and lectures, but then, I had already assumed that much.

We are also really seeing dramatic results from the Concerta for Kenny.  We went for a follow up to the MD, and showed him a document we used to track Kenny's math scores on all his assignments and tests.  He took one look at it and said "Well, that is quite a difference!  I guess we can clearly say Kenny is ADD and that this is effective!" Within 5 days Kenny went from mid-70's in all his assignments prior to taking the Concerta, including a 65% on a test the week before, to a huge jump up to high 80's and a 95% on this next test.  He is just able to slow down and catch more of what he is reading and studying.

So maybe...maybe we are finally finding some answers.  Maybe we will be better able to meet Kenny's needs as we continue to not settle for the status quo and keep pursuing answers.  It is heartening, it creates  some true hope for the first time, and it is a good feeling.  Our big problem is covering the cost of the Concerta.  Even the generic is $155 per month.  I have spent hours searching the internet to see if there is some way we can find it cheaper, but no luck thus far.  Like Dominick said "Somehow we will do it.  How can we not?  Look at the difference!", so if anyone has any brilliant ideas that I have not thought of (Yea, Canada and Mexico already thought of, coupons, etc.) I'd sure be open to hearing from you.

I know that many of you must find these sorts of posts dry and boring, but there are families out there with kids like ours who are struggling with similar issues and have nowhere to turn.  Like us, they run out of ideas, and it is my hope that posting about our day to day trials and successes might help someone stumble on a nugget or two that they can try with their own kids.

All in all, progress is being made.  What makes it all worthwhile?  After Miss Zoe left the other day, and Kenny was on his little "high" of feeling understood and validated for what he experiences every day, he came up and grabbed me in a big bear hug saying "Thanks for not ever giving up on me Mommy.  I know some moms would take the school's reports and believe them, and give up on their kids. I don't blame them, because the people at school are supposed to know what's wrong.  You've always told me that you knew I was smart even when I did things that didn't make any sense and I am so glad I have YOU for a mom!"

Who needs a paycheck? :-)

Here are a few pictures of our latest project, a timeline binder that the kids will use throughout their school years...we hope...if I am not a total loser and stop remembering to print things out for them to use in it:

Josh wasn't home the day we started it as he was working with Dominick.  I was surprised at how all the kids enjoyed this and loved the idea of it!  We are gradually going to add in events and people as we study them, and each of them can add in whatever is of interest to them that is outside our curriculum.  For example, Angela can add in Amelia Aerhart, or Matt can add in things about flight.  Kenny will likely add in more about theological dates that are important.  This is available from Homeschool in the Woods and is on CD with over 1500 images to use.  If what you want is not there, you can simply find an image on Google of whatever you want to include and add it in yourself.  We already had many to start as we are doing Leaders Great and Terrible.  You can color them or keep them in black and white.

What totally surprised me was that Angela and Kenny both had a terrible time using the timeline, but in conversation they are the first ones to come up with the year when I ask them to calculate what year something occurred in.  Olesya struggled, but I expected that and she actually had fewer mistakes than Kenny and Angela.  Matt took a little bit to get how the timeline worked, made a mistake or tow but it was prior to gluing in so he was good and then quickly caught on and helped explain it over and over the to the other kids.

Not a surprise at all was Joshie, who started his the next day, and within less than 2 minutes...seriously...had it wired and totally understood that some pages had notches in 20 years, some in 50 year increments, some in 100 year increments, and that he had to look before and after to see what it was on any given page.  Not a single mistake, and really no instruction.  It is things like this that always catch me off guard with him because it is sort of like he gets it by osmosis or something.  I go to teach him something with math, and usually he looks at me and says within a minute or two "Oh yea, I've got it." then proceeds to do it without any help.  This was the same way, all I did was start to warn him that throughout the book the increments changed, and not only did he "get it", but he immediately explained to me as if I might not "get it" myself "Well yea, Mom, they'd have to do that or the book would be ten feet thick.  Nothing much happened that was important in the earlier years of history, so they didn't need to have as much space for things to be put on the timeline, but when we get to modern times there is a lot that happened and they need more space."  It's interesting teaching a kid like that.  His best buddy is totally like that with reading, not at all really learning just happened.  It is so much fun watching him read, I get a kick out of it...but then he is sort of one of mine too :-)  Put those two together and man, we have quite a pair and cover just about every subject!

Time for me to turn off my brain, and get ready to sleep.  Well, at least try and get ready to sleep, the brain doesn't always turn off when I want it to!


Karon and John said...

I really needed to read this as a teacher who has a high case load of students who learn differently and as a parent of two very different learners from the main stream. Kenny hit the nail on the head when he thanked you for not giving up. I feel all to often professionals and parents give up too quick. I find myself struggling because I am told just to "tweak" my class for some of my special needs students, but like you I know they need a whole different type of class. And not one with 30 kids in it, with a 4 walled classroom, moving at the pace I am going. Good for you for keeping on keeping on. As parents it is our job and our honor. I wish all the parents of my students who don't learn well the main stream way fought as hard as you do. The world and our schools would look drasticaly differnt, and for the better.

Anonymous said...

Great, terrific, wow! You really have perservered and found some of the answers or at least pathways to follow. How about you and Kenny writing to the Concerta company and explaining a bit about why you need help with the costs of the drug. Perhaps they would help you with some of the costs or a supply for a certain amount of time or for all of the time. Kenny writes persuasively also. He could say how it has helped him, and you could talk about the need for some help with the cost of the drugs.

Just a thought while I cheer for each and every one of you,

Karon and John said...

I love Lael's post about having Kenny write the letter. Some drug compaines do have a grant program. It is worth a shot and if nothing else it helps Kenny autheniticaly apply his writing to something that matters to him. Nothing is a better motivator.

Anonymous said...

What a blessing that you found someone who is very understanding about Kenny's ways of learning.

I also wanted to suggest something that may in some small way contribute to more future successes for him. I can't remember how long Kenny has been home or how long he's been speaking English. But something I read once made sense to me concerning math. All four of our internationally adopted kids struggled with math, and some will never be that great at it, but they eventually caught up more than I ever thought they would. I read that when kids are busy learning language, they just can't or don't concern themselves with math. The idea is that their brains are so busy trying to process language, that math is kind of the last thing they want to think about. It's an additional "language" of sorts. And for our kids, I do think that was part of it...or else their brains just matured to the point of being more able to process math, as well as language. I also believe that "math anxiety" is very real. I probably have it! I think whenever there is something we don't understand very well, and we're put on the spot to give an answer or to understand it, anxiety truly does place a mental block in front of us. I wonder if that's not some of what Kenny experiences at times. And just having you and Miss Zoe acknowleding his personal learning style and expressing how smart you really know him to be might take away some of the anxiety and pressure he must sometimes feel.

I also remember when our boys were in early elementary, they could not for the life of them memorize their verses for Bible Club. I would make them more simple, work with one phrase at a time...but to even repeat about four words in a row right back to me was near impossible! I thought they would never be able to memorize anything. That also improved with age.

So, while I'm not at all suggesting that Kenny's learning issues will all magically go away,or that they only have to do with maturity and self-confidence, I do believe that with time and growth, he will be better able to remember and process.

Jst some thoughts...and hopes that all things Kenny keep right on heading in a wonderful, learning direction!

You are a wonder, Kenny! You will learn...and more than most of us might in a lifetime!

Nancy in Iowa

Anonymous said...

Regarding the Concerta, it might be worth it to try a generic ritalin.

Ritalin and Concerta both have the same active ingredient, Methylphenidate HCL (MPH), but with different delivery systems.

Concerta was designed to replace 3x day stimulant dosing through the use of OROS extended release to provide a constant controlled rate of medication. Because of this rebound related to serum peaks and troughs tends to be less and some patients report less or milder side effects.

Ritalin is available as in instant release (IR), sustained release (SR), and extended release (LA). It is an older drug that has been extensively researched. Some prefer instant release dosing as it allows them to individualize dosing around their day...i.e. only take it when needed, not for a full 12 hours.

There are also other non MPH stimulant medications (dexedrine, adderall, focalin, etc) and their generics to consider.

Honestly, it would not hurt to suggest a trial run of generic ritalin to your doctor. You already know that MPH works w/o any severe adverse reactions....If it works with the same efficacy as concerta, great you just saved yourself a lot of money. If not, then you still have a solid option that works well for you, despite its price.

If price and access is an issue, your doctor should be able to provide you alternatives and further information. Doesn't hurt to ask about other stimulant options!

FYI- with insurance I pay $10 a month for generic Ritalin (20mg BID 30 day supply), I believe it retails at $80 without insurance.

You can try having Kenny write a letter.... I would be shocked if big pharma responded/listened to it! ...But you never know :)

Anonymous said...

Sounds like the price of generic concerta won't come down until 2014...

Lori said...

I think Kenny writing a letter is a great idea too! I can't believe the prices of medicines. I found out today that a DIAPER cream that Luke uses (prescription) is $284!!!!!!!!!!!! My copay, thank God, is $25, which is awfully high, but still...$284 for a tube of cream that I could probably make something similar to myself??? Good night. It's a sin. I know science and technological advances cost. I do. I get that. But seriously.

Anyway...can't wait to hear how much more happens with Miss Zoe! How exciting!

Carrie DeLille said...

So not surprised that she thought you were doing all the right things. I hope I didn't do the wrong thing long ago by not putting Nick on those drugs. Sounds like a success story for you.

Anonymous said...

Came back to read other comments and want to make sure you know I'm not at all suggesting that merely time and maturity will solve all the learning issues. I'm glad to hear what a difference the meds made already! And I'm happy to see other readers giving suggestions for possibly cheaper ones. I'm sure this will be a combination of many things that will help Kenny achieve his full potential...not the least of which is having a mom and dad who love him and are so devoted to finding answers for him! Knowing someone (many people!) believes in him goes a very long way in accepting himself and driving forward. He is just one amazing young man...and of course your other kids are wonders, too!

Nancy in the Midwest

Anonymous said...

Just to let you know I'm really happy for you, Cindy, and for Kenny, that you are beginning to find answers! Much about which to rejoice!
Love, peace, and blessings!

Anne Kimball said...

Hi Cindy! I'm finally getting around to visiting your blog. I've heard your name through Lori (her blog, FB). Look forward to exploring more! Anne from

Kelly and Sne said...

So happy you seem to have found an approach that works! I had a conversation just this afternoon on how important getting the right therapy can be. We are still trying to find this to address our daughter's speech problem and it is frustrating! So I can relate a bit.

Anonymous said...

Never dry, never boring!! Always inspiring and entertaining and thought-provoking!! Wondered if you had thought about Sam's club for Kenny's medicine? I think you can use their pharmacy even if you aren't a member and they are supposed to be lots cheaper than other pharmacies. Sometimes doctors have coupons of sorts for some of the meds they prescribe that can help alot. Keep on keeping on -- you are doing great! I love your family!!

Anonymous said...

You probable have already seen this but incase you haven't:

Hope to talk to you soon